Will be on Peritoneal Dialysis soon. How much fluid can one have on PD?

[ilovesoda]

Hi everyone. I have pulmonary arterial hypertension so I can no longer tolerate hemodialysis. I will be on Peritoneal dialysis soon. Just want to know if it's true that there is more allowance for fluid and if yes, how much can you drink per meal? Can you drink, say, a whole can of soda and then have it removed in a single exchange? Appreciate your experiences and any helpful info about this. It's already summer where I'm from and I am literally dying of thirst... 

[Charlie B53]

I started PD the end of May 2013.  My team has suggested that I begin limiting my fluid intake, and I tell them that I get so thirsty that I 'HAVE TO' get a drink.  Part of my thirst may be my high sugars, I have become somewhat diabetic since this started.

Whatever.  Using all 2 1/2%, My bags consistently take off anywhere from 300 to 500, 4X daily, depending on how much fluid I take in.  Either drinking or foods containing a lot of fluid. I imaging that if I were to reduce my fluid intake I 'may' be able to start using the 1 1/2% bags, which could be good as being diabetic the reduced sugar may be helpful and slightly reduce my blood sugars.  Maybe someday.

I don't, or haven't yet, ever experienced any cramping that many of the Hemo patients experience with rapid fluid removal during their dialysis.  Just a very dry mouth and throat leading me to hit that cold water jug I keep in the refrigerator.

I rarely ever drink soda, but cold water and milk are great.

Since we are all a little bit different, it may be a good idea to talk to your team about this to see if there are set limits.

[Charlie B53]

Aren't the dark soda's high in ?? phosphorus?

If so you might consider looking at labels and switch to something that fits our mineral restrictions a bit better.

[Simon Dog]

Aren't the dark soda's high in ?? phosphorus?

Root Beer excepted.

[ilovesoda]

Thanks for sharing, Charlie 

I would be very happy if PD would allow me to drink at least a can of juice or soda per meal. I am so fluid deprived right now on HD since I can only tolerate a small UF goal. Hopefully when I start PD fluid restriction would be less. We're still raising funds for my catheter insertion.

Yup, Simon, thank heavens for rootbeer! But I still have cola whenever I feel like it. I can always take phosphate binders anyway. 

[Michael Murphy]

The rule I heard is 32 oz more then the amount you urinate.  Plus be careful with Root Beer some have phosphorus one Hires I think has phosphorus in either the can or the bottle.  I stick to A&W or check online by brand.

[Sydnee]

Not sur how much this will help anyone, but I can drink whatever I want.
I've been on PD for seven months now. I drink water and ice tea, sometimes hot tea whenever and however much I want. I only use 1.5 bags. No swelling, edema or extra fluid on me.
Here is the caveat I just finished my urine collection for kt/v I had to use two containers. I had 4 liters of urine.

[ilovesoda]

Aww, Michael and Sydnee, I have zero urine output so that makes it much more difficult for me... I'm wondering if anyone out there is on PD, has no urine output and has heart or lung problems... How much can you drink per meal? Thanks.

Sydnee, just wondering why you would switch to hemodialysis from PD?

[Joe]

When I was on PD my Dr recommended 1200ml/day for me. I was only peeing about 250-300ml every 24 hrs, so not getting much off that way. The reality of the situation was that I pretty much drank whenever I wanted. I was drinking primarily water, coffee and cranapple juice, but not measuring.

[ilovesoda]

When I was on PD my Dr recommended 1200ml/day for me. I was only peeing about 250-300ml every 24 hrs, so not getting much off that way. The reality of the situation was that I pretty much drank whenever I wanted. I was drinking primarily water, coffee and cranapple juice, but not measuring.

Hi Joe, really? PD allows you to drink whenever you want to? How often do you do PD in a day and how much fluid in mL are you able to take off in a session? Thanks!

[Joe]

I was doing CCPD, so I did it overnight, with a manual in the afternoon and I came off filled in the morning. Drained 3 hours later and was empty during the day. My total UF for the day was in the 1500-2000 ml range. I watched my weight like a hawk to ensure I wasn't gaining fluid weight. As I said, it worked for me.

[Sammiegrl]

I've been on CCPD for just over a year, my cycler doing 3 exchanges over 8 hours.  I also do a daytime dwell of icodextrin that is drained when I hook up at night--no daytime exchanges. At night,  I use 2.5% solution and typically have a Uf of 1300-1600.  If I feel like I'm getting dehydrated, I'll use 1.5% for a couple of days, so less fluid is removed.   I still urinate, though  much less than I used to.  I have not been given any fluid restrictions.  I typically drink water or iced tea, somrtimes juice or pop (got a SodaStream for X-mas, so I can make my own).  Occasionally, I'll have a bit of fluid retention if I consume alot of sodium, but it usually comes off in a couple of days.  So far, so good...

[ilovesoda]

Thanks so much for the info, Joe and Sammie! 

Sammie, SodaStream sounds like such a cool gadget, considering how much I love soda! I really do hope PD will allow me to drink at least a can or bottle of juice or soda per meal. Right now on HD, I only drink when I have to take my meds. Small sips only. It's driving me nuts really, PLUS it's already scorching hot here because it's summer!!!

[Charlie B53]

I see that I failed to state how much I drink in my first post.

Between the water and milk I drink right around a half gallon daily.

I do 4 manual exchanges, 3 of the 2 1/2% bags and a bag of icodextrin for the long nightly dwell.

Each exchange pulls off anywhere from 350 to 500 ml of water depending on how much I drink.

I do still P, usually 300 - 400 ml daily. Which is still about what I did before starting dialysis.  I had a LOT of water on me then, the first week I lost abouot 40 LBS of water.  SOO much swelling finally gone. 

I am so much better know.

In my case I think the 4 - 5 hour dwells doing manuals work well.  I don't know if using the cycler would work as well and since I have pets, I won't consider the machine as the 'Boys' want out at night, and sometimes the 'Girls' do also.  And since I only exist to open doors for cats and dogs, it's my job to get up.

[JLM]

I, too, tend to be dehydrated.  I very rarely get an UF over 600 per night.  I am encourage to drink.....water, etc.  I mostly drink water when I go out to eat, but sometimes I have diet Coke if the soda comes with the meal.  At home it's diet Root Beer or Sprite.  Because of my home's layout, I can place my machine so I can get to the front door, the kitchen, the bathroom, my computer room and my bedroom, plus the front room where my machine is located.

[Whamo]

You want to avoid soda.  Sugar is poison.  But, if you must, drink from 8 oz. cans instead of 12 oz. cans.  After a couple of years on dialysis I no longer urinate, but I don't get thirsty as much anymore.  I take off almost two liters a day during my ten hour CAPD, and I do a mid-day drain and fill that takes a half hour.  I'm pretty comfortable now, and my weight is pretty stable.

[ilovesoda]

Charlie and JLM, thanks! The stuff all of you shared have been very helpful. They gave me an idea of what it's like to be on PD.

Whamo, soda is my sort of "escape" from all the pain this condition brings... You're quite fortunate that you don't get that thirsty anymore. Actually my case is the opposite. When I stopped urinating my UF started to rise and I had a difficult time controlling my fluid intake. Especially now that I have heart and lung problems, I can just take small sips of water, and only when I'm taking my medications. I long for the chance to drink at least a decent amount that would quench my thirst and hopefully PD would do that for me...

[Whamo]

ilovesoda,  I get that you're thirsty all the time.  My Neph doctor is cool, and he says it's harder to control your thirst than it is to kick heroin.  I was the same way when I started dialysis.  I was still peeing then.  I still drink soda, even though I try to avoid it.  When I passed my phosphorous lab for the first time in six months I celebrated with a coke.  That was so good!  I usually drink orange soda, squirt, or root beer, in 8 oz. cans.  I take my binders more often than I used to do.  That helps with the labs.  It's easy to bump your potassium up too high, too.  That's a bummer, because a lot of great foods are loaded with it.  Be sure to control any constipation issues as they develop.  It is extremely uncomfortable to fill up with fluid with your stomach stuffed up.  If that happens, do a manual drain to avoid the extreme  pain.  And empty your stomach with a laxative.  I use the powder, but lactalose is the roto rooter of the rear end.

[Wat76]

Hi there, I am on PD and I do not have a fluid restriction.  I drink several bottles of water a day, I occasionally drink Orange Juice, sprite, 7up or ginger ale soda.  It all depends on how much fluid you retain.  I don't retain a lot with PKd, and I still pass urine, so I enjoy my fluids.  My body is so crazy, I eat watermelon, a lot of salt to retain fluid.  I am on the lowest solution, 1.5 solution and still gets to dehydrated.  My Neph says I am lucky because most people cant have salt and eat watermelon like I can.

[Sweetred]

I have been doing PD for 3 1/2 years. I have not been given any restrictions with my fluid or food intake. I think alot depends on what your doctor feels is best for you at the time.